In the past year, I have felt myself becoming extremely "calm"...ME, whose middle name is Anxiety. 😆 I am 61 years old, have 2 children living in other states more than an 8 hour drive away, I am retired and my husband (second) is 8 years older than I am. I loved the new me... until I found my short-term memory getting worse (me, who was once told I had a "mind like a steel trap"). I had a headache lurking in the background most days, I developed binocular double vision (each eye has almost perfect corrected vision but can't work together correctly), and dizzy spells that started to go to vertigo that would cause me to fall down. I had also developed tinnitis in Nov 2020 but that greatly reduced when the vertigo began for some reason. My eye surgeon has referred me to a neuro-opthamologist and my family doctor sent me for an MRI.... which has come back abnormal.... with mild white matter disease, biparietal atrophy and multiple white patches. The radiologist put forth several possible causes including MS (my daughter was diagnosed at age 34), myelitis, vasculitis, etc. My family doctor is backing up my referral to the neuro-opthamologist. That appointment is not until early August.
My question is this.... My children do not live near me and I have....and always will... encouraged them to live independent, free, full lives. I gave up everything I wanted to do in life to be there for my Mom (Dad died when I was 19), get married, have children and take care of her in her old age... as she expected me to do. We always lived within an hour of each other and she eventually moved to where I lived, 10 minutes from me. She died in 2012. I vowed to NEVER place my own kids in that position. They are now both married, have no kids (which is fine with me!), son has a nice house in the mountains and daughter is settling on her first home next month. They both have good careers.
My question is this..... should I let them know what is going on with me now or wait until a definitive diagnosis, which may take many months or even a year or so? I feel myself declining, mentally and physically, but I do not want to disrupt their lives or place any undue burden on them. I do realize that, if it is MS, symptoms will come and go. But if it is something degenerative... am I wasting time not saying something to them? Many thanks for any advice y'all can give!
I sort of don't have a choice at this point. My husband....who had an endo/colonoscopy 1 week ago...got a call from his GI that they have to go in again and do some further procedure due to a nodule they found on his duodenal bulb. They took biopsies. And his results are "delayed" on his portal. He did not ask what the issue was when they called him today. His procedure is 1 day before my neuro appt. So things are getting dicey here now. My kids must be told. Many thanks to all of you amazing people who gave me such great advice the past few days. You are all so wonderful!! ❤
Did you also talk with your daughter?
Any updates on your husband's biopsies?
If you have that sort of family sense of humour, you can also tell them you will disinherit any child who fails to carry on "as they were."
Me, I keep health info private from my children until & unless there is bad news to share with them. That's me. I've had 3 cancer scares over the past year (less than 1 year) alone. All the biopsies were negative. Had I called my kids with that news of impending biopsies, I'd have worried them for nothing. IF, however, those biopsies were positive, I'd have told them immediately.
My husband has been having one health crisis after another since 2019, I should add here. So they've known about him all along, and my DD *the RN* has been heavily involved in his care plan, etc. So to add ON to all that with MY health issues which weren't confirmed yet, I felt would have been too much. Again, that's me.
You have a DH with health issues as well, so you're kind of in the same boat. Plus you say you have a close relationship with your daughter, so maybe it's a good idea TO let her know what's going on. You are carrying a heavy load here, Monica, so that's difficult. While you're feeling calm, you're also processing a lot at the same time. I know I was when I was waiting for the results of my tests. The waiting is awful. So is trying to walk that fine line between not wanting to upset our children's lives and wanting their support during hard times. It's a delicate balance, isn't it?
Whatever you decide to do, I don't think there's a 'right' or 'wrong' decision. Do what feels right to YOU, in your heart, and go from there. I want to wish you the best of luck with the outcome here. My next door neighbor was dx'ed with MS about 20 years ago; she lives a full life (she's 55 now) and has flare up's now & again. She's on a regimen of IV's and various supplements and I know she sees a holistic doctor in addition to her regular MS doctor. She looks great and feels quite well, too. Just thought I'd let you know that.
Whatever cross we have to bear in life, we bear it and it's never hopeless, in my view of things. It's just something we take on and deal with/overcome with resilience, love and support from family & friends, one day at a time. Sending hugs and prayers your way, dear one.
If positions were reversed, how would you feel if they "held off" on telling you?
In my family, we have an understanding that we will NOT hold off telling each other (husband, myself and our kids) about possible medical issues. Many years ago my husband's brother held off telling him something about their mom's health, and she took a sudden turn for the worse and almost died. Because BIL had decided he didn't want to "worry" husband, DH almost lost his mom without being able to be there. Fortunately everything worked out ok, but it left a bitter taste in my DH's mouth about being "protected". So we have vowed to never do that.
If you were my mom. I would want to know sooner rather than later.
I would see an Elder Care Attorney or a good one that is well versed in Trusts, Estate matters and things like that.
Make sure everything is taken care of so down the road YOU will be taken care of. And you need to make plans on the possibility that your husband may outlive you. (You mention he has Alzheimer's there are Special Needs Trusts that can be set up in case something happens to you)
IF you think there is a possibility that you will need Assisted Living and potentially Memory Care consider now looking for communities that offer that and you and your husband can move when you are ready.
Now for the when to tell moment....
This is a personal decision. If I were faced with this I would not say anything until I knew for sure what I was dealing with AND had made my plans for the what comes next.
On the other hand if you were my sister I would want to know so that I could help you and support you through this. (and my sister is probably the one person I would tell through the process)
AND...if you were my daughter I would want to know so that I could support you and the family.
So now that this is all clear as mud it should be real easy for you to make a decision.
But I would most definitely let your children know. How they react to the information is their deal, but they should be informed.
Best wishes and good luck!
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